This is a bit of a whinge, sadly! Ok, so I am day 18 of T3/T4 combination therapy on the NHS.
A little background. I had an appointment with an endocrinologist but spoke to a registrar. Fortunately, he advocated for T3 with the endocrinologist. The registrar called back and then gave me the dosage. I questioned it and he said “take it or leave it”, so I shut my mouth and took it...
Results of my last test (100 mcg T4 daily) were:
TSH: 0.34 (0.27 - 4.2)
T4: 19.6 (12-22)
T3 3.6 (3.2-6.8)
... and I felt good that day for the first time in ages, so I think that’s me on a hashis swing. The fact I felt good like that told me that I need my T3 stabilising at around that level / slightly higher and I don’t need a massive cut in T4.
But they cut my T4 to 50 mcg and introduced 2 x 5 mcg T3. I initially felt more tired, happier, less achy and less sensitive to the cold and still feel like that, with the exception of days 8 and 9 when I felt pretty darned good and days 10 and 11 when I felt dizzy. Was that another swing?
Now to the question... I had initially decided to take 6 weeks of feeling not quite right on what I felt was probably the wrong dose on the basis we could test and change it... and who knows, I may have found I was wrong. Giving it a go seemed like The Right Thing To Do. Today I am just so fed up that I hate the idea of putting up with this for another (roughly) 28 days until the test result. I am too tired to get anything useful done... I need to sort myself out and start looking for a job at some point this year... !
I am contemplating finding a way to get in touch with the endo to ask to change it now. I think my dose is more likely 75 mcg T4 + 2 x 2.5 mcg T3. If I’d been allowed an opinion at the time, I could have told them that... and it is cheaper for the NHS!
So, do I - can I? - suck it up and stick with it for another 4 weeks or... risk looking like a squeaky wheel with a T3-prescribing NHS endocrinologist? I don’t know.
Virtual hugs and reassurance required! On one hand, I think I should probably stick with it so as not to upset him and have some collateral for my argument in the hard numbers of the test result; on the other hand, I wonder why I am putting his feelings and some numbers before my well-being and what I instinctively knew on the back of the last numbers. And then they are COVID-busy... doesn’t feel like the right time to be a pain and maybe my part in the effort is putting up and shutting up for 4 more weeks... !
What to do... ?
Best,
Lotika.
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Lotika
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I am still reasonably new to thyroid health! But I absolutely recognise your conflict.
In theory I think it's best to just ride it out until your next set of bloods. You'll either have proof that you need a different dosage OR you might find your body settles to the dosage you're on and you just need to tweak it. It's utterly crappy to have to 'play the game' though.
I know that feeling though, when it just feels impossible to get through another day, let alone another month. You have my sympathies. Go easy on yourself and don't think too far ahead. Just focus on what you need to do today.
Well, to reduce your Levo from 100mcg to 50mcg when your FT4 was 76% through range was a pretty stupid thing to do. It would have been fine to leave your dose at 100mcg and see what happened when T3 was added. Adding T3 is going to lower your FT4 anyway, but changing both at the same time - lowering Levo plus adding T3 - is not a good idea, just do one thing at a time and wait to see the result. But doctors don't think like that.
So you are likely feeling rubbish because your FT4 is a lot lower than it was.
I certainly wouldn't suggest changing your T3 dose.
In your position I would ride it out, you have to give it time for your levels to stabilise and lowering Levo plus adding T3 at the same time is making it more difficult anyway. Give it 6-8 weeks from dose change then test and see how you feel. Yes it's frustrating but that's just the way it has to be. Don't chop and change too quickly or you'll never find your optimal doses of either. Only ever change one thing at a time.
So, just to turn that into a plan of action... because I feel better with a plan... with some light at the end of the tunnel...
Would you say the plan should be:
1. test TSH, T4, T3 privately after 6 weeks
2. Post results here, get some feedback, get a strategy, so that I have time to think about it before the NHS ambushes me into something
3. Either let the NHS test or share private results with them when I am ready with my plan
4. Wrangle with them over dosage with MY strategy in mind, whatever that is, when we have the test results
5. Change dose as advised by NHS... or find another way.
I basically don’t want this again: to be shouted down and borderline threatened (“take it or leave it”) before I have my ducks in a line...
It is ridiculous when I think about it. Every job I have had since graduating about 22 years ago has been a comms job in some way, shape or form and yet communicating with doctors is apparently nigh-on impossible.
communicating with doctors is apparently nigh-on impossible.
Oh, so true.
I have recently had a GP walk out of the room and leave me there with just the nurse because I wouldn't agree to reduce my dose, discussion wasn't an option apparently only submissive agreement after being bullied.
As for your plan:
(1) and (2) - yes I agree.
(3) - private results may not be accepted, in which case hope that the NHS tests reflect the private results.
(4) - you may or may not get agreement with what you have planned. Depends on the GP whether you can find a compromise.
(5) - depends on outcome of (4), you may need to find another way.
The GP walking out of the room is astounding! Is he, like, 16?!! Actually, that’s unfair to 16 year olds. My nephews would do better! They both like to engage in a logical argument...
I guess it will be the endo - or worse, the “take-it-or-leave-it” registrar - who I have to convince, given that it is their trial. Boo!
Shame, I think I could manage with the GP as he is very good at listening to his patients. And my GP loves a blood test, so if I could make a case with him based on TSH, T4, T3, then we’d probably be good. As long as I’m a rare one who doesn’t get a super-suppressed TSH just by looking at liothyronine in the wrapper. But I don’t think it’ll be his call, sadly!
Jesus that registrar sounds disgusting. Patient complaint could be an idea. I would only agree to see the Endo so I never saw him again. Threatening a patient seems to violate the hypocratic oathe. You’ve had good advice. To keep going is harder. You have support here.
Well, I feel a bit mean because he was the first person who listened and got me the T3. He just didn’t know the answers to my questions about why they were cutting T4 so much... I imagine they are pretty overrun at the particular hospital too - they did the first Oxford jab and are probably badly hit by COVID. It was late in the day and I think the poor chap was tired and stressed... I’m frustrated that it is a bit of a theme for me and for so many of us, though, unfortunately!
I have come across some rude doctors when I worked for NHS ... some of them have the "God Complex" Some years ago I went to see a Gynaecologist about heavy bleeding because of fibroids. I took my husband with me who was a hospital manager at the time. The man we saw was from Africa and after listening to me explaining my problem he started to lecture me about the women in his country. It seems they never complained and would walk for miles just to give birth etc. (this is true I'm afraid) He implied what I was experiencing was trivial. My husband had been quietly listening to what he was saying and then told him. "Well we are not in your country now are we and I need you to treat my wife" He then arranged for me to have a ultrasound and various other tests. 😀
Good that the husband was there! Maybe I’ve been on too many management courses for diversity and all that, but it strikes me that the doctor was being a touch xenophobic/ racist!!
On a similar subject, my husband postulated that my treatment at the hands of a different nhs endocrinologist a couple of years ago would have probably been less aggressive and patronising if I’d been a man... I hadn’t thought about it, but i think he is likely right! I hope the answer isn’t that we have to take a man to our appointments. Still, I’ll be quicker to ask “would you speak to a man like that?” in the future...
Whenever I have taken my husband with me to any doctor appointments they always talk to him. The only reason I took him that time is because I thought his job might help me get better treatment because the NHS do look after their own. I am now like the rest of us struggling to get the right treatment. Goodness help us now they are busy dealing with the coronavirus because we will be bottom of their list now.
Just sending a hug. It takes time to find the right dose for you even with a good doctors support, but many of us have had to experiment ourselves and go our own way to find what suits us. I know it is really difficult to do this when you are feeling so bad, but think of it as climbing a mountain. The view from the top is amazing!
(and you can lob stones from a great height at the registrar!)
Thank you for the hug! Mathew Paris quoted someone as saying “it gets harder before it gets easier” in his column this morning and think that is about right in this case!
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